I have had no bad side effects. Only good ones! I have asked repeatedly what the side effects are - and each time I have been told that none have yet been found. The big difference between this drug...
Linahawk - I know a male that is on vedolizumab - and has been part of the phase 1 trials, and he said that it saved his life. He comes in once a month, and gets his infusion, and an hour later, he...
Here are the drug trial details http://clinicaltrials.gov/ct2/show/NCT01294410?term=UC+AUSTRALIA&rank=5 I am currently on the open label drug study - and I have now had 3 infusions, and without a...
When I was in getting my Anti IP 10 antibody infusion - I am on the MDX1100 drug trial - the guy next to me is on vedolizumab, and has been for about 4 years (I think that is what he said?) and he is...
I have been on it for the past 3 weeks (not constantly - just as needed) and have found that for the UC pain - that it is a god send. I am not allowed to take codeine, immodium or buscapan as it...
My sister has been on tysabri now for over 4 and a half years - she has multiple sclerosis - and she is doing fantastic on this drug. She has an infusion once a month. After the infusion she sleeps...
I hear you. I soooo hear you. I am this >----< close to getting a permanant ilieostomy done - and lose the lot - just so that I can do things with my family. I am currently on the MDX 1100 drug trial...
Chob-ola? Call me freakin humpty dumpty :tongue: I am overweight due to a myriad of problems - PCOS, IVF, 3 pregnances involving steroids, then also steroids for UC, salofalk/uc meds! For the past 6...
I am in the first phase, where you either get 25mg/kilo, 15mg/kilo or the placebo. With the improvements that have been seen, we know that I am receiving the drug, just not sure how much. Once I have...
Have you considered this study http://clinicaltrials.gov/ct2/show/study/NCT01294410?term=UC+AUSTRALIA&rank=5&show_locs=Y#locn I am currently part of the Australian trial, and I have had 4 infusion,...
Hey All I started on a drug trial 9 days ago, which involves an infusion week 1, week 2, then fortnightly from then on. All I know is that its an immunomodulator - I have not been given details as to...
So just breathing is a good day to you? How low have we sank and accepted this disease. A good day is being totally healthy with no symptoms to speak off, imo. Somedude - Even being healthy and...
The honest truth?! You learn how to cope with it! There are going to be times when you just have to have an accident. There are going to be times when all 3 of you are sitting in poo, and you just...
Most pregnant women survive on crackers for the first 3 months! (I did! I lost 10 kilos too, due to hyperemesis!) Just make sure you take the correct pregnancy multi (elevit is good here in Oz!), and...
Thanks everyone! From what I understand it is a protein inhibiter, and stops the white cells from attacking. The GI got very excited when I said that my sister is on Tysabri for multiple sclerosis -...
I changed GI's when my ex-GI yelled at me, and then yelled at my son, after making us wait nearly 2 hours! I am now seeing a new GI, who is a professor of gastro, and who leads med studies for UC and...
Asparagus is also part of the onion family - so if you can not tolerate onions, this could be part of the problem!...
Thanks everyone! I live in Australia, so they have different restrictions here on meds, which restricts what they can and can not prescribe. For example - remicade is not prescribed in Australia for...
Hi All! I had my first appointment with my new GI on Thursday, and whilst I was there, he did a couple of things that I have not come across before! 1 - he checked my hands - so he looked at the back...
I was put on 50mg/per day of 6MP, 2 weeks before christmas 2011. Then 1 week before christmas it was upped to 75mg, as all liver/kidney/bloods were good. 3 weeks later, I noticed that there was blood...
Yep! It sucks! My best friend knew I was sick, but when she saw what I went through with an attack, she just couldn't believe it. She visited me after I have had my babies (5 in total, twins, then...
I have given birth to twins, naturally. And I would rather give birth than have UC cramps. Labour pains have nothing on my UC cramps. Mine feel like I have knives stabbed in, and then twisted, then...
Thanks Everyone for your replies! I have had no internet for about about a week, so have only been able to get back on now. I have FIRED my GI. I went for an urgent appointment last Friday - and not...
Hello everyone - I am from Australia, and was diagnosed wth distal ulcerative colitis in 2006, but 'knew' I had the disease for quite a few years before that. Unluckily for me, in the genetics pool,...